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Worrying unnecessarily?

Posted , 8 users are following.

joan83529
joan83529

Hi, here I am again hoping for some advice .Diagnosed with pmr about twenty months ago , have had problems with bursting blood vessels in my eyes , currently on 11mg daily steroids and struggling to reduce further . Was advised recently to stay at that dose after some pain in my shoulder and a blood test  showing inflammatory markers were raised.Over last couple of days I’ve experienced some jaw pain on one side of my face whilst eating . The pain was not severe  nor continuous ,could eat but I had not experienced it before and obviously being aware of possibility of GCA and its symptoms I am concerned. I will try to see my GP on Mon and if any other symptoms arise over weekend will take myself to A &E , I just wondered if other people had similar experience  in the hope of reducing my anxiety. Am writing this at quarter to one because I’m going to end up awake and worrying .

0 likes, 17 replies

17 Replies

  • EileenH
    EileenH joan83529

    Posted

    Sorry about the delay in reply - the forum seems to be on the blink and there are no notifications of posts!

    The conjunctival bleeds are probably nothing to be concerned about - steroids make the capillaries delicate and they commonly leak. Looks awful but isn't a risk.

    If your blood markers are rising AND you have symptoms - you should have been told to increase your dose, not just stick where you are. That is the sign of a flare and they are common for the first couple of years - you aren't abnormal in that. 

    However - I would be concerned about the jaw pain when eating. I assume it goes away when you stop chewing? And returns when you start again? If so, that is classical jaw claudication and does mean you need tosee a sensible doctor asap.

    But you obviously know what you are looking for - so I won't worry about you too much. 

    All the best - and tell us how you get on.

    • joan83529
      joan83529 EileenH

      Posted

      Thanks Eileen ,I really appreciate your response,am not worrying about the eyes any more, too concerned about the jaw pain .It’s not severe and it doesn’t occur every time I eat , trying to make myself feel less anxious here! Am considering taking myself to A&E in Derby in the morning rather than battle for an appointment at my GP. I believe suspected GCA is classed as a medical emergency and since I was referred to a rheumatologist there whom I saw about6 weeks ago am wondering whether the “direct approach” might be a better idea than trying to get through to the surgery. 

    • EileenH
      EileenH joan83529

      Posted

      Yes, it is a medical emergency but it does depend on meeting someone who knows that and knows the warning signs. If A&E at Derby won't play, try calling the rheumatology department directly and asking for advice from them. And at A&E be firm you would like the opinion of a rheumatologist, preferably the one who saw you but it doesn't really matter - take someone with you for back-up if you can..

    • joan83529
      joan83529 EileenH

      Posted

      Well so much for  the plans of mice and men ...didnt get to Derby because of accident A38. Went to GP . She had the results of a blood test taken last Weds , inflammatory markers not raised so according to her ,can’t be GCA. I asked if fact that I already take Pred might affect the blood results she said no and that I’ve probably chewed on something tough and pulled muscles . She ordered another blood test and I should hear from  them later today if they show something amiss . Don’t know what to make of it . If pains continue or anything else happens I’ll follow your advice  and try the rheumatology department . Thanks Eileen , l really appreciate do your help and knowledge . 
    • EileenH
      EileenH joan83529

      Posted

      Were your blood markers raised before the PMR diagnosis? She's wrong of course -  up to 1 in 5 patients with GCA have no raised markers ever and more don't produce them when on pred. 

      Sounds like nothing changes on the A38!!!!

  • lynda62707
    lynda62707 joan83529

    Posted

    Hi joan, I was dx'd in June with pmr. Currently on 15mg prednisone with horrible side effects. One if those is the rapid growth of cataracts, particularly in my right eye. I've been STRONGLY advised I need surgery within the next month or so or I'm in danger of losing my eyesight in that eye. Very scary...have an appointment next week to try and work out details.😕

    Please try not to worry ( I know, easy for me to say), and keep me posted.

    I'll be thinking of you and sending good thoughts!

    • joan83529
      joan83529 lynda62707

      Posted

      Thanks Linda for replying, I hope you manage to access the treatment you need . I’m going to get to see a doctor somehow tomorrow , better to up the dose of pred even just in case rather than risk my eyesight.
  • Anhaga
    Anhaga joan83529

    Posted

    I get these burst blood vessels in the eyes.  Simple artificial tears (preservative free) make them go away much more quickly.  Hope your symptoms don't worsen.  Last year I pussyfooted about while my symptoms got worse and worse and I continued trying to taper.  Finally took enough to deal with it all but it took a whole year to get back to my low dose.  Another attempt to drop lower, attempted much more carefully and slowly, nevertheless seems to have caused another flareup.  And I'm under considerable stress right now.  Instead of hoping it would go away by itself I bit the bullet, took 5.5 mg more than my usual dose (of 1.5) for a couple of days, miraculous relief, and a rapid drop, not overnight mind you, has got me back to 2 mg within about ten days.  I'm going to hang out here for a while then cautiously try 1.5 again.  Lesson learned - don't delay!  

    • joan83529
      joan83529 Anhaga

      Posted

      Thanks for the reply Amhara. It’s reassuring to know that other people have had similar experiences with their eyes .At the moment I’m more concerned about the pain in my jaw that I’ve experienced occasionally over the last few days ,having read that it can result from GCA . Will see a doctor somehow tomorrow !,
  • andre68439
    andre68439 joan83529

    Posted

    Hi Joan. If you haven't had this (eye bleeds) before it is probably the steroids as Eileen suggests. I have had these as well, particularly after sneezing while on Prednisone. They look nasty but not necessarily anything to panic about. I have PMR, not GCA and have been free of Prednisone for a little over 3 months. I ended up in the chair at a Nuero-Opthalmologist since during my treatment period I went blind in one eye for a few minutes (Amarousis Fugax). It was diagnosed as a Retinal Migraine. During that visit I showed him a selfie of my red eye. He suggested the red eye can be helped by taking vitamin C and Rutin, since both strengthen blood vessel walls. I bought the vitamins but looked up the foods that contain Rutin to reduce the amount of supplements I take. So far so good but I am steroid free so not sure if it would help for you while still on steroids. Then again can it hurt to try? 

    • Anhaga
      Anhaga andre68439

      Posted

      That's interesting, it may help me, too.  Thanks, Andre.

    • joan83529
      joan83529 andre68439

      Posted

      Thanks for your reply Andre. Am resigned to looking like Dracula’s mother but will look into your suggestion re Vitamin C and Rustin 
    • lynda62707
      lynda62707 joan83529

      Posted

      LOLOL joan....are we talking "pasty"?? I can totally relate! I need to invest in a good self-tanning lotion quickly or else I won't have to worry about a costume for all the trick-or-treaters on the 31st!!😁

    • EileenH
      EileenH lynda62707

      Posted

      Probably the red eyes rather than skin colour!!! Joan has a bleed that shows on the white of the eye - out of the tiny blood vessels we all can see on the surface. Sunglasses are the order of the day!
    • EileenH
      EileenH joan83529

      Posted

      It will fade in a week or so - in the meantime, celebs sunspecs are the order of the day!
    • lynda62707
      lynda62707 EileenH

      Posted

      Whoops...my mistake! Went right over my head about the eyes.

      I think I've got Halloween on the brain right now!

      An honest mistake. It comes with the territory of having been a kindergarten teacher for so long. So many parades and parties with my kids!😕😁

    • ptolemy
      ptolemy joan83529

      Posted

      The same happened to me recently just in one eye, but pretty well red all over. Sadly it has now gone when I could have had it for Halloween.
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